Cedelle 05/06/12
Last reply 6 years ago
Steroid Question..

I was put on steroids to aid recovery from my relapse last year. I got better felt really good.. (i though id gone completely back to normal..) and then i guess what happened was the steroids wore off, and now i struggle. pretty much daily. Can anyone tell me if i will ever go back to normal? it was my first ever relapse and ive not had one since. please help me if you know anything about these steroids! (I was on a 5day course taking 5 tablets a day) thank you x

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Becks
6 years ago

it sounds like you had mega dose steroids – the usual treatment for a relapse. After the course the steroids can help for about 6-8 weeks and it has been said that it takes 6 months to recover from a relapse at which point the majority of recovery will have taken place.

You may still have some recovery time left from the steroids – my earlier relapses meant that i did over a period of time reach a near full recovery each time, however the more relapses i had the amount of recovery did lessen each time – my relapses started coming every 4-6 months and i was recovering but didn’t have enough time to reach my potential following each attack before the next one hit but there was signs of some improvement so i was still classed as relapsing and remitting- am now on new treatment and already at the 6 months stage from my last realpse and not looking like another in sight just yet and so i am getting a real shot at improving through being able to continue and build upon my physio exercises and am walking short distances unaided – something i’ve not done for over a couple of years – remember tho everyone is different so what my experiences are may not be the same as yours.

Good luck – keep your chin up and keep doing everything you can to help your recovery from a relapse – i used to say use it or lose it. Hope that helps 🙂


Cedelle
6 years ago

Thank you for your response, I had my relapse in Sept last year, its been over 6 months, and I don’t feel as tho I am improving. I’ve been on Copaxone for over 2 years, should I consider changing maybe? Thanks for ur input! X


DJDsouza
6 years ago

I feel like I’m in need of steroids again, but since I’m not having a distinct relapse more a series of changes, I probably won’t qualify for them. I was lucky in that I could almost set my watch by when I’d recover – usually always 4 days after my last dose of IV sterids


Becks
6 years ago

its worth chatting to your ms nurse/consultant further regarding your options as there is so much out there. I’ve had a course of prednisolone steroids following my mega dose steroids on 2 occasions which helped but i had them straight after finishing the mega dose methyl-pred.

Regarding DMDs i was on rebif for 2 weeks but was allergic, copaxone for 2 years before developing IPIRs so couldn’t continue with that and then switched to avonex which i was on for about 7 years before my MS was said to be aggressive and non-responsive to treatment so i’m now on tysabri – 5th infusion next week so its early days and i’ve only been given funding for 6 infusions on the NHS through the appeals process and i have to re-appeal next month for more funding.

My own personal view is to try and keep on the drug you are prescribed for as long as possible before switching – just from my own personal experience as now i have very few options left if i don’t get the further funding of tysabri, That said if its not working then your Dr/Nurse may think something may be better for you – i’ve always been pro-active in asking for treatments – getting their pros and cons and not just settling for putting up with something that is not working or is causing me problems, which is why my consultant attempted what he thought was a futile application to the PCT for tysabri funding, but i pushed for the application to be made…and i was successful in obtaining treatment for an initial period and the drug looks like its working for me so fingers x’d the re-appeal is just as successful.

In short, talk to the experts regarding all your options and never give up hope that you can improve from you present position – i was just saying to hubby today i never thought i could have achieved the position i am finding myself in with my current recovery – i’d resigned myself to not being able to walk unaided ever again – and i have a plethora of different coloured walking sticks – one for every outfit – you should ALWAYS match your accessories – earrings, handbag, stick (!) so its a real mental adjustment i’m having to make – so there is hope out there that recovery can improve even after a very long time with the right treatment, physio and attitude x x


Anonymous
6 years ago

I was put on a similar course of methprednisolone and they worked great the first time, not as well the second and not at all the third. I am now on Rebif a year and things look well *touches wood* I was averse to taking the steroids at all but was persuaded by the MS nurse and as you can see from my tale they were the rule of diminishing returns in action. I’d have to agree with Becks, stick with the medication, it took me six months on Rebif before I felt results.


Cedelle
6 years ago

ok thank you! what is an IPIR? I am hoping to get on a trial at my local hosp for the Ampyra drug so maybe i need to start being a bit more pro-active rather than me waitiing for people to think of me! I am going to ask my MS Nurse if she can think of anythng which may help me on a daily basis. Thank you!


aardvark
6 years ago

Hi @Cedelle

They’re Immediate Post Injection Reactions – like shortness of breath and sweating – in extreme cases you can feel like you’re having heart attack type symptoms. @Becks will be much better placed to talk about IPIRs, as she’s experienced them first hand – my experience with Copaxone is pretty limited…


Pulpculture
6 years ago

As Becks says definitely ask your MS nurse. They can also give things like Human Immuno Globulin and various other treatments to help aid longer relapses. Always give the nurse as much info as you can and they will guide you. Keep a diary of your relapses and describe the effects / locations of the issues. Discuss if Copaxone is right for you now. It may have worked for a while and an alternative could be better now. The Copaxone IPIR is really scary. I genuinely thought I was dying. The Betaferon IPIR is like you have been thrown naked into a gigantic freezer and you’ll can hear my teeth chattering over ten miles away. Good luck. Matthew


Becks
6 years ago

Aardvark is right about the IPIR – immediate post injection reactions – it doesn’t happen to everyone and i was on copaxone 2 years before it happened to me – its not common and so hopefully it won’t happen to you!!

basically it started as soon as i injected on the odd occasion, not every time – my lips and face started to tingle and i had severe immediate shortness of breath – unable to get a breath at all – as they got worse i started to pass out and would come to on the floor (i lived on my own at the time and it happens so suddenly and no warning that i didn’t feel safe anymore – like i say it was not every injection so i would be lulled into a false sense of security and then i would have another one!). i then came to sweating and after an hour i would be uncontrollably shaking/shivering for a couple of hours.

I was the only person on copaxone in my area so the hospital didn’t know what to do – my neighbour saw the reaction and called 999 – felt like a right drama queen – apparently it was very frightening to see – wasn’t great to experience either!!!

it happened on a bank holiday weekend once so nhs direct said i had to do my next injection ‘under supervision’ however my gp surgery didn’t have a cardiac resuscitation machine – by which time i was freaking out – so i had to go to hospital to do it (it feels like what i imagine a heart attack would feel like but my ecg was normal and it last minutes only)…however because it was my own injection i was not allowed to inject inside unless admitted to a ward which they would not do and they wouldn’t let me into A&E so my friend and i were sat in the car park immediately outside A&E so if the reaction occurred my mate could run in and get immediate help (yes that was their solution!) as i mixed my injection, dropped my trousers to inject in my leg and then we saw a security guard coming towards us and we were under a cctv camers (great!) so we drove off very quickly as lo and behold that injection went absoluelty fine

I think (and hope) things have got better now for copaxone users – IPIR is recognised – it wasn’t very well known back then and i was told i was having panic attacks (!) and they wanted me on anti depressants but i fought my corner, found all the research on IPIR and they conceded the point and changed me onto avonex.

Please don’t let IPIR put you off in any way though – if i was already on copaxone or was thinking about taking it despite what happened to me (and like i say i think I am in the minority) i would still take it as hopefully it won’t happen to you – i heard someone was on copaxone 10 years before they experienced IPIR and I’m sure there’s loads of people on here who’ve never had a problem – good luck with it all – let me know how you get on x


Pulpculture
6 years ago

Just to put mine situation in perspective – I was on Copaxone for a year and a half and I only ever had ONE reaction. Yes scary – but I got over it within an hour. I believe it happens if you accidentally hit a vein (which is rare with the locations we are aiming for.) On the whole it didn’t play on my mind whilst I was on Copaxone. (Becks you sound like you had a nightmare!) I am trying to keep a balance as I wouldn’t want IPIR to put someone off a treatment that might do them the world of good 🙂


Gav
6 years ago

@Cedelle I wouldn’t consider switching dmds unless the side effects are unbearable or you start relapsing more heavily on your chosen treatment. Copaxone, and the other dmds aren’t designed to help your recover, just reduce the number and the severity, of your relapases. As far as the recovery from a relapse bit goes, it can be a LONG time for some people, I have finally started to feel like my old self again after my last relapse, in July last year, that was a big one. There are no hard and fast rules with MS, you just need to ride it out 🙂


janep
6 years ago

I was on copaxone for 2 years and only had one IPIR which was nowhere near as scary as the ones Becks experienced! Immediately after the the injection, which I recall hurt more than usual, I got really, really hot- bright red in the face, and my heart started racing. Fortunately I clocked that it was a copaxone reaction and managed to just sit and breath for a couple of minutes and it passed. Pretty scary but fortunately for me, very short-lived and only one in several hundred injections! I’m also just coming to the end of my first ever course of steroid treatment for a recent relapse and have been really relieved by how well my body has responded- no beard, no roid-rage, nothing! Let’s hope they weren’t sugar pills- I start a new job on Monday and would rather not stumble in on the first day!xx


Becks
6 years ago

couldn’t agree more with the comments – i think switching DMDs should be a last resort – always try and stick it out, i think my reaction to copaxone is very much in the minority and i went through many many IPIRs before i gave up and switched from copaxone.

In respect of your long term treatment its a great drug so i didn’t want to give up on it easily – i would highly recommend anyone offered it as an option to seriously consider trying it and not be put off by potential IPIR as chances are it won’t happen to you – hey if you read the warning label for paracetamols you probably wouldn’t touch them with a bargepole either – i never read warnings on label packets as i’d end up scaring myself half to death and end up a self fulfilling prophecy!

My experience i think is rare and despite this i would still highly recommend the treatment!!!! if it helps i’ve been told i’m very sensitive to treatments which is why i’ve been on many of the DMDs but i stayed on each one to the maximum that i was allowed – i would never swap for the sake of it if the current meds were working – even if they are working in a hidden way for your longer term benefit rather than in an obvious everyday way.

Chat it through with your MS team who know you and your symptoms the best and take time to think your options through rather than make a snap decision as your treatment may be helping you more than you realise as there could be many external factors affecting your everyday well-being – heat stress fatigue etc etc which is why keeping a diary (recommended in an earlier post)will help to see what is really going on – there are load of other meds, exercises, complimentary therapies that can help with individual issues you are having rather than switching your DMD. Hope that helps? x


Pulpculture
6 years ago

Another idea is to score yourself daily out of 10 on each of the following – fatigue / relapse / mobility etc – This can give a good picture especially when you factor in events such as Flu / Colds / Hayfever season / over exercise etc. Plot it on a spreadsheet and see what’s affecting you. I wish someone would write a simple phone APP for this. Would be good to be able to put the figures into your mobile every day after a reminder alert pops up and spits out a spreadsheet at the end of the month – LOL


DJDsouza
6 years ago

An app sounds like a great idea @Pulpculture..if there’s one thing I’ve always needed in coding, it’s having a clear task in front of me of what’s needed to be done. Just feeling too fatigued to even think about starting this! 😉


funnybank
6 years ago

i’m very confused about steroids. this quote is from the ms trust
‘Many studies have shown that steroids are effective in speeding up recovery from relapse but make no difference either to the degree of recovery or to the long-term progression of the condition.’
whenever i ask a doctor for clarity on this they just seem annoyed.
i’m scared to take them because i’m so allergic to everything and most of my experience of medication has been making the situation worse. a friend suggested that if i were to try them to take a drug that protects the stomach lining, as she developed pancreatitis after a course of steroids.


Pulpculture
6 years ago

Hi Funnybank. I can only give my experience and I am not medically trained (disclaimers out the way – LOL) Steroids do not do anything more than SPEED UP something that is or isn’t going to happen anyway. Using another analogy – If you had an old knackered car and needed to get to Ipswich to see one of the greatest football teams on the planet – it would normally get you there in a leisurely manner. Alternatively – If the car is having a relapse it will get there really slowly but should ultimately get there (you might miss the game though.) If you put in Super Unleaded, change the oil before you set off and change anything looking ropey (Steroids) you’ll just get there quicker – same route, same car park at the other end – and you get to see al the game. Not sure if that helps. 🙂

I typically use steroids twice a year. (They don’t recommend any more than twice a year.) They just speed up my recovery. Never had any stomach issues myself. I typically try and keep a set of steroids in the house at any one time. If I was going on holiday and feeling a like I was having a bit of a relapse (before I set off) I would get some off my MS nurse before going (just in case)


DJDsouza
6 years ago

Good analogy @Pulpculture. Am sure I’ll be rushing to see Watford beat Ipswich again, so I’ll definitely have the steroids! 😉


janep
6 years ago

hey, I’m just coming to the end of my 5 day methylprednisolone course and have had no stomach issues. My MS nurse did suggest that they could add some kind of antacid-type medication (E.G.omeprazole) to the prescription if I had a sensitive stomach as some people can have problems but I was fine. Definitely worth checking though if you’re sensitive to other meds- they’re supposed to help you feel better after all! x


Pulpculture
6 years ago

Hi Jane. Do you find you eat more on these. I go mad in the food cupboard by day three 🙂


janep
6 years ago

@Pulpculture- I was doing really well until today! Final day and got serious midday munchies but figure one day out of five isn’t too bad and made myself walk to the shop to get snacks so hopefully cancelled some of it out! 🙂


Pulpculture
6 years ago

I get ravenous on them. Being vegetarian doesn’t help either. You can’t really go mad with a fruit bowl can you. Usually end up quaffing crisps.


Cedelle
6 years ago

This is brilliant, i have asked for an apt with m nurse today as im starting to develop symptoms AGAIN! Right hand is heavy, stiff slow, my walking is very slow, ridgid, y’know all the delights ya get! I want steroids!!!


janep
6 years ago

oh no! Sorry to hear that Cedelle, hope you get your apt through quickly and start to feel better soon! x


janep
6 years ago

Anyone else experience head and neck pain after steroid treatment? I seem to have jinxed myself by saying how well I’d been! Late last night my neck started to hurt and it feels like someone tried to strangle me! Got a very sore throat too so guessing it’s just my body reacting to the loss of the steroids (finished the course 2 days ago). That’ll teach me to count my chickens…


Pulpculture
6 years ago

I think there is a bug going round that matches those symptoms. My daughters had this a couple of weeks ago. just a guess.


janep
6 years ago

thanks @pulpculture- that might be the reason, I did read that steroids can increase your susceptibility to infections- typical! Just need to take it easy for a bit longer I guess- patience Jane 🙂


Cedelle
6 years ago

Thanks @janep I had an apt and she has said she thinks I have just over-done things and its not a relapse, I feel like its a relapse but I have to go with the pro’s opinion hey! X

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